The notion of tinkering with an embryo's DNA – let alone creating designer babies – makes many of us recoil. But let us not forget the shock and horror at the news of the first "test-tube baby," Louise Brown, in 1978.
After her birth, her parents received blood-spattered hate mail (and a tiny plastic fetus). Now we call it IVF, and no one bats an eye.
Technologies that allow parents to pick and choose embryos based on genetic testing are already a quarter of a century old. But the dawn of CRISPR, a technology that can "edit" mutated DNA at the embryo stage, has raised the spectre of Nazi-era eugenics and identikit babies out of a sci-fi thriller.
What if laws were in place to forbid scientists from using technologies to create the superrace we fear? What if we had consensus, and an ethical framework, to decide which embryos should live, and which should die?
Such questions are the beating heart of science journalist Bonnie Rochman's new book, The Gene Machine: How Genetic Technologies are Changing the Way We Have Kids – and the Kids We Have, published in February. In it, she explores genetic testing as part of a continuum of innovations that have profoundly altered human procreation. The technologies keep changing, she said, "but the questions do not change."
Rochman spoke to The Globe and Mail about the ethical, legal and social implications of baby-making in the genetic technology age.
Science has been changing the way we make babies for decades. Why are the ramifications of genetic testing so important right now?
The pace of these technologies has really increased, and now we have all of these advances in genome sequencing. It's by no means a run-of-the-mill test, but it is used more and more with sick children to aid in diagnosis. And there is a lot of research and discussion about the value of incorporating it into health care for our babies, not to replace newborn screening, but to augment it.
Parents jump at the chance to have genetic testing for their kids. But you say many don't know what they're getting into.
We don't know what we're getting into because genetic counsellors, at least here in the U.S., are not woven into the fabric of the pregnancy-checkup experience. The end result is that parents are nowhere near as informed as they could be. They are accepting tests without fully understanding why, and what those tests can reveal.
What do we misunderstand about genetic testing?
Well, first of all, a genetic test can analyze just one gene, or it can refer to something like genome sequencing, where you are scanning all 23,000 genes in a person's genome. And, in general, there's a misperception that genes are destiny. If you have a BRCA mutation, a breast-cancer mutation, this gene means that you are more at risk than the average woman. But it doesn't mean necessarily that you will get breast cancer. Then there's a whole field called epigenetics – turning genes on and off depending on what is going on in the environment, and within your body. Genes, in many cases, are just part of the puzzle.
Are parents equipped to live with this kind of uncertainty?
Everyone has mutations, and with genome sequencing, you're going to get information that is potentially worrisome. I really would encourage people to know themselves. If you are the kind of person who does a ton of research and really craves information, then you may want this sort of information. If you're the kind of person who is more head in the sand, "Don't tell me any bad news," then you may not.
What can we learn from genetic testing for terminal diseases such as Tay-Sachs?
The Jewish community has been a model for how to implement carrier screening [testing individuals before they conceive]. They have been so successful at eradicating Tay-Sachs within their population that most cases of Tay-Sachs now are in the Irish population. They are also more at risk for Tay-Sachs; French Canadians are too. Now there's more of a movement towards universal carrier screening. We live in such a melting-pot world and a lot of people don't know their ethnicities. It's more equitable to test everyone for the same diseases.
What about the concern that conditions such as Down syndrome may disappear, reducing human diversity?
First of all, there are plenty of people who do not believe in abortion, so Down syndrome could never disappear. There is a quote in the book from a professor who studied eugenics. He basically said that if he were to survey people who are compassionate and not mean-spirited, pretty much across the board, most would agree that there are just some conditions that it's better for a baby not to be born with – like a baby with no brain. The question is, who is the arbiter of where that line is drawn? What is our perception of disability in society? These questions are going to be raised more and more as the testing evolves.
Why shouldn't we worry about an era of "designer babies"?
I'm not saying it will never be the hot-button issue, because who knows where science will take us. However, currently, we don't know of anything called the "smart gene" or the "slam dunk gene." There are multiple genes involved in intelligence or athletic ability or musicality. There's also the whole matter of epigentics, turning genes on and off. And even if there was something called the slam dunk gene, it doesn't necessarily mean you would want to play basketball.
Why did you write so little about CRISPR, the gene-editing technology that allows scientists to repair defective DNA?
CRISPR is changing and evolving so quickly that it's better to follow it through newspapers and magazine articles. One of the challenges in writing this book was to write it so it's not outdated quickly. I decided to focus more on the implications of all this technology and all the ethics we have to tangle with, because those won't change.
Genetic counsellors emphasize individual decision-making. But the sum of all our choices will determine what kind of species we become.
Yes, genetic testing is making us ask questions that many of us have never before asked. It's not your mother's pregnancy any more.